A day in the life of a single mom raising a teenager and a child with autism. I believe that it's not what we receive, but what we give away that defines us. I want to give away all that I have learned and experienced in hopes that it will help families raising a child with autism or any disability. This is my candid journal where I open up my world and share my joys, knowledge, lessons, disappointments, challenges, frustrations, fears and successes - one day at a time.

Tuesday, October 30, 2007

Getting help for Nicky...if I knew then what I know now

Nicky’s intervention program is not working. This means he has lost his a routine, he is not moving forward, his schedule is different so his frustration tolerance is almost zero. When his routine changes he gets frustrated because he does not know what to expect and he has more free time, so he does puzzles, spends more time on the computer, goes out with mom, reads more books (all the things he likes to do) and doing these things escalates his repetitive behaviors and he begins to want to ONLY do those things and he ONLY thinks about those things. He gets so over stimulated that he doesn’t sleep well, he’s more aggressive and his negative behaviors increase. So, he’s not learning, he’s frustrated, and he is losing the skills the intervention was trying to teach him because they didn’t stay with it long enough for him to master what he needed.

Which means I am not sleeping and I am caring for him (being his therapist which I have never wanted to be) and battling with what to do. I always have in my mind that Nicky’s window of opportunity for learning will slow as he ages, so time is not our friend. When we hit these lows I go to the place where I am trying to get control so my kiddo doesn’t suffer, I begin searching for other solutions. AHHHH this makes me angry and crazy!

For the past 7 years I have been working with the schools, doctors, state programs and therapy groups to get the best or most appropriate program for Nicky based upon his needs. I struggle and collaborate with experts and gate keepers on a plan, and eventually we agree on a plan and then I feel excited “Now it’s going to be better” – “Good job mom you did it, you can relax now”. Then the program begins and for one reason or another it slowly falls apart, like it just did not the umpteenth time.

Therapy for autism is the equivalent to a prescription for illness or radiation for a cancer patient, not a guarantee but the best hope modern medicine has to offer. Therapy is the only intervention PROVEN to help kids with autism improve and lead more independent lives (Speech, Social Skills training, OT, Floor time, PT, and Behavior Intervention – ABA, DTT) The intervention/therapy/support plans that make up Nicky’s program are his prescription to get him as healthy as possible. For years we have had the prescription, but we have not been able to fill it!

Nicky’s “prescription” includes 25 hours of ABA therapy (Applied Behavioral Analysis) This means the therapist comes to our house and uses anABA program help him with comprehension, social skills, self help skills and aggressive behavior. The agency has a wonderful supervisor who knows what she is doing but I have learned over and over that she just doesn’t have enough staff to do the job. I’ve tried to work with her, because the problem is everywhere – so switching agencies (which I have done 2 times) doesn’t guarantee things will get better. Agencies promise they will be able to provide staff consistently and in my case none of them have. Since September 6th we have lost 2 therapists and last week Nicky received only 4 hours of his prescribed 25 hour program. We have been with this agency for almost 2 years and we have never received Nicky’s 25 hours. After many battles we have for short periods of time gotten close, but it never lasts more than a few weeks or a month.

I know that Nicky is a kid who learns, I have kept records and I can see his progress. I know that Nicky has had some benefit from this intervention; I also know that he would be doing better if we were doing the program as prescribed. Which we have not. I don’t know exactly how much we have lost, but I am very confident saying that the program has been at best ½ has effective as it could have been, had it been actually implemented as prescribed. I also know that the older he gets the slower he is able to learn, and I don’t have any way to measure what we have lost in time. If we were treated like this at a hospital we would have an open and shut case of mal practice.

When Nicky was first suspected of having autism the one message I got over and over was “Get help now”, early intervention is the key. When I asked “where?” nobody had answers, so I began reading and becoming an expert in autism so I could understand what was happening. Then I went to get help and found few that could help and those who could had long waiting lists and most did not accept insurance. Today, even though we know more about autism, nothing has really changed, but the problem has moved. The biggest problem before was getting a diagnosis, we have made progress there. Now the BIGGEST PROBLEM IS GETTING HELP AND KEEPIN IT. The help is not available, and if it is available the waiting lists are long and at a rate of $90 to $125 an hour for therapy, which is not covered by insurance, we are forced to depend on the systems that have promised to help – but can’t deliver how they need to.

I have learned that getting qualified intervention is not a Nicky problem, it’s not me or us, it is a systemic problem, because: there are not enough trained therapist available to help all the kids that need help and the pay for being a therapist is so poor that nobody stays. Therapists take these jobs on the way to the next job that will pay better. It’s more like a paid internship than a job, so people come in and go out – so there are never enough trained folks in the system at one time to do the job. So we start the program and when we begin to get up and running, they leave, this cycle repeats over and over. Two steps forward, one step back, one step forward two steps back…over and over again. From agency to agency the same problem. Oh, and since all the agencies have waiting lists from 3 months to 1 year – there are not many options available - there is no simple solution like change agencies.

I have learned that for all of the in home intervention, if our therapist cannot work with me and Nicky in the community he will always be an invalid and never achieve any sustainable level of independence. So now I am searching for a team that can be in my home and go with us – all the regular places kids and families go – so we can teach Nicky about danger, communication and self regulation and I am looking for more programs in the community where Nicky can be with other children. Keeping him in the house and school is not enough – he doesn’t learn how to not unbuckle his seat belt and pull my hair when we pass his favorite places – when he is home. Our kids have to be out in the community and we have to get the help to teach them how to survive or none of us will have a life.

If I knew this 7 years ago (which I didn’t and nobody else did) I would have put my focus on finding ways to extend his school day with the support of a therapist where he could work on play and homework EVERYDAY. I would look to find programs in my community where he would be supported by a team and even though there was turn over it wouldn't be all at once, so there would always be the consistency of the place and some of the people - he would never drop to zero. Then, I would then have worked to find a person who could be with us every weekend – a therapist who could take Nicky everywhere with out without me and my daughter; to the park to play with kids, to the roller rink to skate, to the zoo, all the things that all families do – while teaching every moment. This would have made more time for me and my daughter and it would have been a consistent plan I could rely on. Then I would had added all other therapies and programs that were available to me. All the time knowing that the constants would be school and my weekend support.

I know that despite the best intentions of many, few will be able to deliver consistently on all counts as needed. If you are getting 80% consistently you are doing good and stay there. I have found that with all of it’s problems – if you can get a good team – the support from your local school will be the most consistent program we can get during school age years. So focus on getting a great school program. This is where it can really pay to build relationships with your home school and find out exactly what your child needs and ask the school for it. That will mean getting outside opinions of what your child needs, get reports, get recommendations, hire experts, and be sure to understand "best practices in autism". This is not the time to be afraid of asking for what you need and going all the way to due process if necessary. I have yet to see a parent go through the due process with a plan that was legitimate and supported by experts not get most if not all of what they needed that the school district has the ability to provide. But I have seen families be denied because they did not prepare and fight the battle. So, this is the battle that can pay off for you and your entire family.

Notes to myself and others...

As of today: Therapy is the only intervention PROVEN to help kids with autism improve and lead more independent lives (Speech, Social Skills training, OT, Floor time, PT, and Behavior Intervention – ABA, DTT)

Our kids have to be out in the community and we have to get the help to teach them how to survive or none of us will have a life. Check with local schools, parks and recreations and mental health groups to find community events/activities that welcome children with disabiliteis. I learned that ASO has a soccer team just for special needs kids.

No matter how great our program appears we have to monitor it and think about what it is doing for our child. Based on many many conversations and experiences everythree months is good for major review of goals and outcomes.